[asis]

Stem cell transplant and extramedullary plasmacytomas

by asis on Mon Nov 28, 2016 7:04 pm

I was diagnosed in June of 2015 with multiple myeloma. I was almost done with treatments last year (October 2015) when extramedullary plasmacytomas popped up throughout my body. They responded quickly to treatment, so I didn't think much of them at the time.

Fast forward to August of this year, when the plasmacytomas reared their ugly heads again. This time it was in my chest and crowding my organs. I quickly lost 10 pounds during the treatments (5 weeks), but was having some luck in their response. However, once the first break came, the tumor had doubled in size. It turns out it had been growing the whole treatment (14 cm x 8 cm x 8 cm, nestled between my esophagus and aorta).

They gave me an ultimatum: Go big, or go home to hospice while I suffocate under the tumor that was wrapped around my lungs and heart. So I committed to their old school D-PACE treatment and it worked (fingers crossed that it doesn't grow back).

So now I am set to begin the procedure to begin harvesting stem cells the middle of next month, but they have no way of telling me how effective the stem cell transplant is going to be on the extramedullary plasma­cytomas.

So I'm wondering if anyone else has any perspectives on whether the plasmacytomas will respond to the stem cell transplant.

Am I always going to be living under both barrels?

Wishing I were not my own guinea pig ...

[Gala]

Re: Stem cell transplant and extramedullary plasmacytomas

by Gala on Mon Nov 28, 2016 10:47 pm

Hi Asis.

First of all, let me tell you that you have my sympathy. Extramedullary plasmacytomas are a terrible thing and also a sign of aggressive disease. I am glad your tumors have responded to treatment and I wish you a lasting response with all my heart.

My sister in in a similar position. She is now undergoing treatment for her multiple cutaneous plasmacytomas (on and under her skin). I've posted about her experience in these threads:

"Extramedullary disease on the head / skull" (started Nov 2, 2016)
"EDAP treatment regimen" (started Nov 14, 2016)

She is also responding to treatment, but we are, like you, worrying about the length of response and also whether the autologous stem cell transplant would be effective for her disease. She already had her stem cells collected just before her plasmacytomas appeared. Today they want to collect more to have a good amount so that she has the best shot. I think she is scheduled to have at least one more round of chemo before the transplant.

Sorry, I do not have the answers for you just yet. Extramedullary disease is rare. But I am definitely interested in hearing more about your experience. I'll be posting more about my sister's experience, and I also will be following your progress. Hope you keep us updated.